Podcast Notes: 

Hosted by Glyn Williams and Konrad Jacobs

Guests: Bethany Donahue and David Moore from Liverpool John Moores University

In the podcast introduction, Glyn discusses Mast Cell Activation Syndrome (MCAS), an immunological condition. He notes that MCAS has gained attention from a pain perspective, particularly with a noticeable rise in young patients presenting with this syndrome in our clinics. It is postulated that the syndrome is associated with pain diagnoses such as headache, abdominal pain and neuropathic pain. Glyn raises concerns about how MCAS and pain diagnosis are sometimes considered to have a causal relationship without clear scientific backing, drawing parallels to past controversies with conditions like Ehlers-Danlos syndrome. He highlights the need for more research to understand MCAS’s impact on pain, as well as the importance of not letting diagnostic labels deter patients from engaging in effective pain management.

Key Topics & Insights from the interview:

Bethany’s Unique Perspective on Autism and Pain:

Bethany Donahue shares her invaluable perspective as both a researcher and an autistic individual, shedding light on how autistic people uniquely experience and process pain. She candidly explains how recognising and interpreting pain can be challenging, as autistic individuals may need support to identify and articulate their experiences.

The Complexity of Pain and Autism:

David and Bethany discuss the need for clinicians to approach pain assessment and management in autistic patients with flexibility and a tailored approach.

In their research, they found no significant difference in the baseline pain threshold between autistic and non-autistic individuals. However, they noted higher anxiety and fear related to pain in autistic patients.

Communication and Emotional Regulation:

Bethany shares that an effective clinical approach should include time to build rapport, such as asking about the patient’s interests to create an immediate connection.

The Role of Co-Creation in Pain Research and Healthcare Design:

Bethany and David advocate for incorporating autistic voices directly in research design, emphasising co-creation to better address the real needs and experiences of the autistic community. They also explore the idea of creating sensory-friendly healthcare environments and question whether traditional hospital settings are ideal for treating autistic patients.

Group Support for Neurodivergent Youth with Chronic Pain:

David touches on the potential benefits of group therapy for neurodivergent young people, noting that when group settings are safe and inclusive, they can provide essential social support.

Future Research and Clinical Recommendations:

Bethany advocates for more research on autistic perspectives of pain and the efficacy of current treatment models, urging that these studies start from the lived experiences of autistic individuals. David suggests that focusing on individuals' strengths, can lead to better adherence and outcomes for autistic patients.

Authors:

Dr Glyn Williams is a Consultant paediatric anaesthetist and lead for the pain management service at Great Ormond Street Hospital, London.

Dr Konrad Jacobs is a Consultant clinical psychologist and rehabilitation lead for the Oxford Centre for Children and Young People in Pain. Twitter: @konradjacobs

Contact

Please email Glyn and Konrad with comments and feedback: [email protected].

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